Its a Peachy Birthday by D.P

International Womb Cancer Awareness Day falls on my birthday. As a womb cancer survivor, I can view that as either very appropriate or as taking things just a tad too far... The jury’s still out, but I did have a good day so I’m not complaining. You might ask what I did that was so special – the answer is that I went to work.
Working is something I’ve done all my life; be it at my studies, at being a mum, at doing my job or at anything else I’ve put my mind to. So many things mesh together to make a person who they are and what I do is a big part of my identity. I guess it defines me in some way. So there I was at work, having a good day, and it reminded me just how very lucky I am.
As a womb cancer patient – and whether I like it or not, that’s officially what I am until the five year monitoring period is up and then, hopefully, never again although, “In this game we never say never,” to quote my surgeon – the one thing I soon got told was that I had to do as I was told.
Now, for a stubborn woman, that was not exactly music to my ears. I said I’d try, I’d do my best, but I wasn’t giving any guarantees. Or maybe the words ‘I’ll try’ came out of my mouth while ‘Yeah, right’ was going through my head. I can’t be totally certain, I don’t recall the exact details of the day I was given the news of the diagnosis, but if you know me well then you’ll draw your own conclusions I’m sure.
‘My Life In Their hands’ wasn’t exactly my favourite title at that point.
At my most ill before the cancer diagnosis, when I couldn’t breathe properly, I couldn’t walk properly and I was in almost constant pain, the one thing I wanted was normality. It was a psychological need that over-rode what my body was telling me and it’s where pushing myself to go to work came in. I got called stubborn – no surprises there! I got told to be kind to myself. I got asked what I was doing there when I should be at home in bed. All kindly meant and the answer was that I was trying to still be me. I needed the normality of doing the things I would usually do and I didn’t want to be beaten by a body I felt had let me down so badly. If that makes me stubborn, so be it. But it also makes me a fighter, it kept me sane and it gave me something to aim for, because I already ‘knew’ before the official diagnosis that I had cancer, I simply didn’t know what sort. And when I was finally told what sort, I’d never heard of it before. And that’s just plain wrong.

My Story by J.H

August 2011 was a momentous month for me, in more ways than one. I had my two sons visiting from Australia with their families, and life was pretty damn good.
I had felt incredibly tired for weeks – possibly months, but had put it down to the excitement of getting everything ready for their visit, and running round visiting people and places with them, and having great fun and laughter with all the joys that having a 15 month old baby in the house brings.
I was 53, soon to have my 54th birthday in September.  I was having a horrible time with the menopause – had I finished my periods or not?
Every time I thought  I had, I had such a disappointment to find that, actually, after 6 months of having no periods, along came another. I didn’t pay too much attention to it to be honest, I was far too busy getting on with life – planning for the visit, running the Canine Charity that I had founded with a couple of friends, and looking after my 80 year old mum. 
However, just before August I started to bleed after nothing for 9 months, and just didn’t stop. I was so fed up after four weeks of bleeding that I decided to pop to the doctor to ask for some tablets which would stop the bleeding and make me feel lesstired.  What a shock when I saw him and asked him for some medication, when he said ‘Yes, I could certainly do that for you.  But I wouldn’t
be doing what is best for you. Bleeding like this and for so long, is not usual and we need to get this checked out – it will probably benothing at all, but it needs to be checked’.

There and then he phoned and got me an appointment for the following week, to see a Gynaecologist at a local hospital.  I thought it would be a quick visit, possibly an examination and that would be it. But no. After taking my medical history – problems with very painful periods from the age of 13, a son born by Ventouse, the next by emergency C Section, endometriosis and fibroids - I had a smear testand was booked in for various ultrasound scans and a hysteroscopy.

On the 15th September, my sons and their families went back home, and the house was quiet again. I was really sad, missing them from the outset, but that happens every time. I had the scans, and went for the hysteroscopy, but the doctor couldn’t manage to do it under a local anaesthetic, so I had to be admitted for a general, which was done on the 28th September 2011 – it’s strange how dates have now become very important to me! 
I was in and out on the same day, and went home armed with an appointment to see the consultant in 2 weeks time. However, the very next evening I had a call from the hospital asking if I could pop along to see the doctor the following day.  I explained that I already had an appointment for a fortnight, but the secretary insisted that the consultant needed to see me thenext day.
That is when I knew.

So, on the 30th September, I went along with my husband, after a sleepless night, and I remember sitting in a different room than usual to see the consultant, a room with lots of different jerseys from various football, rugby and cycling stars. I remember staring at them as the consultant explained that I had womb cancer.
I remember hearing the words, and listening to how, if I had to have cancer at all, this was the ‘best one to have’, but carrying on looking at the framed jerseys on the wall. No tears. No hysterics.
Just a calm acceptance.

I looked at my husband, who was sat next to me, clutching my coat and my handbag.  He was a deep shade of red, and staring at me intently. I kept thinking that we had only just waved our sons off back to Australia – what am I going to do without them near?
I heard the consultant ask me if I was alright, and I said. ‘Yes, I’m fine thank you – so what happens now?’

What happened next was that I was referred to the Christie Hospital. Because I was overweight the consultant I saw decided that he would prefer me to have an apronectomy as well as a Total Abdominal Hysterectomy, so I was also referred to a Plastic Surgeon. A date was arranged for surgery, but I was phoned a week earlier to see if I could go in the next day for surgery. I agreed, and had surgery on 16th November 2011.  I woke up in the Critical Care Unit, after having an
apronectomy, total abdominal hysterectomy and bilateral salpingo oophorectomy, and had a wound which was 20inches long, which took some getting used to, but I had the most fantastic nurse in the CCU, who got me through the 3 days whilst I was in there – I will never forget him.

I was allowed home after 7 days, with the District Nurse coming in to check on me every day. However, the day after going home my 20inch wound decided to come apart, leaving me with 3 pretty big cavities. The disrict nurse sent me back to the Christie for a review, but it was
decided to pack the wound and dress it on a daily basis. So from November through to April 2012 I had a daily visit from the nurse to pack and dress the wound, and a weekly visit to the dressings clinic
for a check and a photograph of the wound to see how things were progressing. Through these weeks there were several dark days, and I was so thankful for my circle of family and friends.

In April I was given the ok to be handed over to the Oncology team. The histology had showed that the cancer had grown into my cervix, so I was prescribed 20 external radiotherapy sessions, and 19 hours ofBrachytherapy (internal radiotherapy). I got through the external sessions with nausea, bowel and bladder problems, and shocking fatigue, which I had expected.  The 19 hours of Brachytherapy was very challenging – not painful, but not being able to move for 19 hours, apart from when the nurses turned you to rub yourback, was difficult. The worst thing was the boredom, and not being
 able to eat or drink much because of being flat on my back, but at 5.30am my 19 hours were up, and I had the tastiest tea and toast EVER!

I experienced very bad back and leg pain a couple of weeks after the Brachytherapy, so the Oncology team organised a CT scan, which showed up a problem with my liver and with my lymph nodes – but no cancer in my pelvic region. Fabulous news!

The hardest thing in dealing with all this was having my sons so far away and having to tell them, and also telling my mum. Watching my husband trying to stay positive and deal with everything was
terrible too. I just wanted to gather everyone who is special to me together and keep them near.

I was very ignorant of the symptoms of womb cancer, and I am especially thankful to my doctor for acting so promptly.  From what I hear doctors like mine are few and far between.
 I have done so many positive things since my diagnosis – after not having a proper holiday in the past five years I have been on two in the past few weeks, I took part in the Sport Relief Mile (only
walking it, but it felt great!), after being a singer up to two years ago I am now singing again and have got a ‘gig’ lined up for Christmas! 
Cancer hasn’t beaten me – it made me evaluate my life and get on and enjoy it.

So here I am, almost 12 months after my diagnosis, 3.5stones lighter (with more to go!), a very strange body shape (I lost my belly button as a result of the apronectomy!), still having good days and bad, but let me tell you – life is damn good!

Why we need to raise awareness.

Today is 20th September. International Womb Cancer Awareness Day.

I had never heard of womb cancer before my diagnosis - and I'm not alone. There are many women in Womb Cancer Support UK who were unaware of it also.

This is why this awareness campaign is important - if women are not aware of womb cancer then how can they know if they are at risk of getting it?
We are all aware of the various campaigns around for breast cancer; cervical cancer; ovarian cancer but there is nothing for womb cancer.
That is why we at WCSUK are determined to change things!
This is our  2nd awareness campaign! Although we do raise awareness throughout the year, we felt there needed to be a full on campaign to get womb cancer out in the open and get women talking about it.
We are very grateful to the women who have "told" their story - either by writing the various guest blogs that have appeared here during September or allowing their story to be turned into a mini video that have been put on youtube!
You can check them out here! http://www.youtube.com/user/WombCancerSupportUK/videos?flow=grid&view=0

When I got my diagnosis I felt alone and scared! Living on a small island made me even more isolated - there was no one I could talk through who knew how I was feeling.

That was the main reason behind setting up WCSUK - I didn't want other women to feel so alone as I did. The main group now has 500 followers on FB and we have a closed chat group of over 70 women who support each other through the ups and downs of having womb cancer. Some are 5 years+ in remission - others have only just been diagnosed.
The one thing that stands out is the age range. Womb cancer is often regarded as a cancer of post menopausal women but we have women in the group who are in their 30's and 40's, Our latest lady to join us was 19 years ole when she was diagnosed!

This above anything highlights why we need awareness campaigns like the one we are running throught September. There needs to be much more done to highlight the risk factors and the signs and symptoms to look out for.

Sadly, we can only do so much. We are a small group, with no financial backing. But we have the support of some lovely women who are helping to spread the word bit by bit and if we can get more women to be "womb aware" and get any abnormal bleeding checked out by their GP, then we are doing something positive.

Thank you again to everyone who has read the blogs; watched the videos; shared the links; changed their profile picture to something peach. It all helps to raise awareness.

Always remember - no one fights alone!

Kaz xx

©WCSUK

My Story - by S.B

Continuing on with our guest blogs for September's awareness campaign, here is another survivor's story!

Being in our 60s, “romantic interludes” between my husband and I are for high days and holidays! It was two days after one such occasion, his birthday, that I started bleeding. My last period had been about 7 years previously and the bleeding I had reminded me of either the first day or last couple of days of a period. Not too heavy but needing a pad. About 9 years previously I had had a polyp removed from my cervix which had caused heavy bleeding and I just thought it must be another of these.
 My GP examined me and couldn’t see anything. She did not think there was anything to be concerned about but said if I wanted she could refer me to the hospital for a thorough examination. When I went I saw the Macmillan CNS Gynaecology/Oncology who examined me and took biopsies. She said there was thickening and my cervix was “spongy”. Without her saying it I got the strong impression that she thought there was something seriously wrong, especially when she asked if I had anyone with me.  I hadn’t.
When I went back for the results and saw the Consultant Gynaecologist I had my daughter with me while my husband waited in the Waiting Room. The Senior Macmillan Cancer Nurse was there and there was a box of tissues on the table. I was told the results were bad, I had endometrial cancer and possible cervical cancer. It was Carcinosarcoma, a rare and aggressive type. My daughter had hoped I was being pessimistic and had not expected this. She was extremely upset as was my husband. I was quite calm as I had expected bad news.

I had my operation and was put in a Gynaecological/Oncology Ward amongst other ladies who were in for non cancer hysterectomies, prolapses, etc. I was very ill after the operation and they couldn’t figure out why my temperature was so high and why I was so sick. For four days and nights I had doctors coming to me for blood samples, I had “umpteen” drips of various things and the worst thing was I overheard other patients talking about how difficult it was to sleep with the doctors coming to me throughout the night.
I had combined chemotherapy for one dose but it made me very ill and my liver was being affected. They cut the drug out that can cause liver damage and gave me another single session. Again I was very ill so they decided to stop it. They said my body could not cope with the chemotherapy.
The upside is they are pretty confident they got it all after removing my uterus, cervix and lymph nodes and in a way my husband saved my life.

So ladies do not ignore any unusual bleeding.

My Story - by JH

Continuing on with our guest blogs for September's awareness campaign, here is another survivor's story!

I've never liked fair ground rides; I remember once screaming so loud on a ferris wheel my mum had to get it stopped for me; but in May 2011 I started on a rollercoaster ride that I couldn't stop, I just had to hang on for the ride.
My journey started by a simple trip to the Docs, an oddity for me, I very rarely went. I had found a small lump on my vaginal wall, quite painful. I thought it was a cyst, which it was, but my GP noticed something; she said I looked really pale, anaemic in fact and ran some blood tests.
I got an urgent call the next day, they wanted to see me straight away. I was borderline needing a transfusion I was so anaemic. My GP asked me about my periods.  I had always had really heavy long periods, from being 18, they had got worse over the last three years, but I had just dealt with them.
My GP was fab and said it needed looking into. She referred me but I heard nothing.  In the meantime she fitted me with a mirena coil. This lasted a week,  I had a bad reaction to it and hemorrhaged, so my GP removed it and was horrified by the amount of blood and clots.  She said I needed to see a consultant urgently; things were not right. I was put on meds to slow the bleeding, but it didn't stop, this was in October.
She got on to the hospital, they finally sent me an appointment for November.
November came I was still bleeding, I saw a young registrar who took biopsies and examined me, did some scans, didn't say much, just said I needed more tests!
December came, I was given a hysteroscopy, it was agonising, I was still bleeding, no-one really answered my questions.
By now I was feeling quite ill; my GP was seeing me every week, checking my blood levels and giving me lots of support, hounding the hospital for answers and results; she felt now my only option was a hysterectomy.
January came; the hospital said all biopsies were negative. I had an enlarged twisted tilted womb, with lots of cysts and fibroids;  however they wanted to try an ablative first, I said I felt a hysterectomy would be better, but the consultant said they had to at least try, so I put my faith in them.
January 25th the ablative failed; my womb was too enlarged and twisted.
By now I was in agony. I spent a week.in hospital after the ablative, but no-one seemed to listen; they just gave me pain meds and more meds to slow the bleeding.
My GP was outraged; she wrote to the hospital to speed up my appointment, I was by now unable to work,
The hospital finally saw me in March.
The consultants first words were "I hear you think you need a hysterectomy", I just broke down; all my agony, pain, frustration just flew out. I think I even screamed at him; another consultant came in, "we will see what we can do" she said. I walked out feeling like a mad women who was faking it and putting on.
I rang my GP in floods of tears; she reassured me she would hound them again.
The letter came a week later; I had to see another consultant the following week.
Progress I thought! The appointment was brill, I could have the op in May; a long wait but I could manage, even if by now I was on 45 tablets a day and still off work.
The day came; they wanted to try it by Lap, I put my faith in them. I came round on HDU, the operation had took 7 hours, I ran into breathing difficulties as my womb was so hard to remove, they had finished up leaving my ovaries and cervix, no biggy I thought at least no more bleeding, after a long year the ride was over.
I came home 4 days later but I still felt so ill, just part of it I thought.
On 30th May 2012 at 1pm the hospital rang; could I come in tomorrow /I knew then it had to be bad news. I wanted the roller coaster to stop, but the driver wasn't listening!
I didn't sleep; my Hubby and I arrived at the hospital at 10:00 am; finally at 10:45am we were taken to see a consultant; the same one who asked me why I wanted a hysterectomy! She dropped the bomb shell;  I just wanted to scream at her. I was being transferred to Sheffield for my care; Chesterfield didn't deal with cancer! All I could think was,  thank god for that!
Sheffield rang me the next day; "could I be there by 4:00pm"; god its happening fast, I thought, but good!
Mr Gillespie was brilliant; he talked through what had been found but said it was hard to know exactly as my womb had been shredded! "What??" I asked, I didn't know, Chesterfield hadn't told me! He was appalled;  He said my treatment had been dealt with wrongly from the start, but we had to move on.
I was booked in for a open abdominal BSO and cervical stumpectomy, plus abdominal washings on the 21st of June. I saw another consultant Miss Kew, who would do the op;  a consultant anaesthetist Miss Bland, because of the issues I'd had before, and my CNS Angela, they were all amazing. For the first time I felt listened to, I felt confident in them.
My GP rang me when I got home, she was stunned with my diagnosis but she too was happy I was at Sheffield.
Op day came; the nurses and doctors were wonderful, so attentive. I had a melt down, think it finally hit me.
I finished up on intensive care but Miss Bland never left my side till I was stable. The op went well but they couldn't get my pain under control, or my blood pressure.
A week later I was home, sore and tired, but I didn't feel ill like last time.
On the 2nd of July, my hubbies 50th birthday, we were given the results. My pelvis was clear, no cancer was found anywhere else; however because of the uterus being shredded they were not sure yet if I needed radiotherapy. Never the less I was elated!
The hospital called the next day, they felt to be sure I should have Brachytherapy. They knew my cancer was 1b but thought it likely to be a grade 2 but because of the mess Chesterfield had made they couldn't guarantee it.
On the 4th of August I went into Weston Park. Again all staff were excellent. I have to say it wasn't the best experience I have had, it was a hard 3 days of treatment but the staff got me through.
So here I am, hopefully at the end of my rollercoaster journey. I hung on tight, gritted my teeth; through the loops, bumps, and terrifying moments, I can finally slow it down. My GP; Sheffield team; my family and friends got me through. I survived. I am still here, still smiling and that is all that matters!

My Story - by M.S

Here is another guest blog as part of Womb Cancer Awareness month. It has been reproduced from an existing article.

September is Uterine Awareness Month...if you are able to read this, then you know somebody who is currently fighting Stage 4 of this disease. This disease is very curable if found early, but there are no real tests to find the disease unless you speak honestly to your OB/GYN about any female problems you are having.
In my case, I had a pap smear and full pelvic exam done last October and passed it with flying colors. I was having problems with strong bleeding and was given a pill to control the hormones. By January, I was so anemic I needed weekly iron infusions, and when I went to a follow up visit with my OB/GYN in February, I was bleeding so strongly in the office that they had no choice but to do an ultrasound and schedule me for a D&C. Even after the D&C, the doctor said all is well since I am cleaned out now..it was a week later that the tests came back...Uterine Cancer.

The head of the OB/GYN office, who gave me the test results, asked me why his doctor even did an ultrasound and D&C on me because at my age, abnormal bleeding is treated with hormones, but also said that thinking outside the box in this case was the perfect thing to do. He also told me that uterine cancer is the cancer to have if you have cancer (two weeks later I learned that my kind is definitely not the kind you want to have)
Five days after my diagnosis, I met Dr. DePasquale, whose first question was "Why do you have this cancer? You don't have the age or the body for it" Both of which are usually a compliment (He meant I was too young and not big enough lol)..but once he checked my uterine, he asked if somebody was with me..to get my mother and to talk. The talk was one of the hardest things I went thru because Dr. D did not give me a good long-term outlook based on the size of my Uterine (which six months earlier during a pelvic exam was called being a normal size).

I had surgery the week later and during the surgery, Dr. D came out to see my mother to tell her the cancer was all over the pelvis and he had to cut me open to make sure nothing spread to the abdomen. I will be forever grateful to the women and men who had come to the hospital to be with Mum during my surgery. Not sure she would have made it without your support. When he came out after the surgery, the news was better...he was able to remove all cancer cells he saw (and based on reports he took his time checking out my pelvis and abdomen to make sure nothing is overlooked)
A week later we received the pathology reports..and the news was mixed. Nothing was in the bladder and bowels, but two "small" lymph nodes were affected. And the cancer was puzzling to the doctors because it is a very rare and aggressive form for which no real clinical research exits. We went with the "normal" treatment plan of chemo and radiation..and started with Chemo four weeks after my total hysterectomy. Time is of essence and Dr. D. said I was young enough to stand it.

Today, I am two weeks away from my last Chemo session...and the outlook seems to be better than we dared to hope in March. Due to an infection six weeks after the surgery, Dr. D ordered a full abdomen and GI track ct scan which came back clear (I told him he took the opportunity to do a full scan which is not normal for uterine cancer..and the doctor who barely smiles...just smiled at me). My CA 125 levels are as low as they probably will ever be (it's one of the blood tests to determine how successful treatment is)..and Dr. D who told me in March my outlook is bleak, told me in August that he thinks there is not much cancer if any cancer left in my blood.

I have decided to tell my story because uterine cancer does kill..but is detectable..if you as the patient make sure your doctor takes your concerns seriously and does some tests..even if he/she has to think outside the box. It occurs to "young" women pre-menopause as well...not just post-menopause. It's scary to be told you don't have much hope...but that's when it is so comforting when the first thing you "hear" during your prayer is "I am the ultimate healer...don't looks at statistics".

The last six months have been a rollercoaster and this journey is not over because we are still fighting..and recurrence is a very distinct possibility...but in all of this I am very thankful for gaining this closer walk with the Lord (the ultimate healer), my friends, people telling me their own cancer stories and showing me cancer is not a death sentence, my family (be it thru our blood or the blood of Christ) and doctors, who have a picture of Christ leading the surgeon's hand during surgery, hanging in their office. BTW..the above is no particular order (after giving my first thanks to Christ)..I am equally thankful for all of you.

Again, September is uterine cancer awareness month...why not schedule a pelvic exam for this month to make sure you will not be part of that statistic? And if you are...feel free to reach out to me...I will pray, cry, talk or do whatever you need me to do with you :)

This is me!

Today is Saturday 1st September 2012 - the first day of Womb Cancer Awareness Month.
Over the next month, we shall be featuring articles by various guest bloggers to help raise awareness of womb cancer.
Today, I want to share with you my story. This is my journey with womb cancer and how Womb Cancer Support UK came about.

I was diagnosed with womb cancer on 23rd Dec 2009. I had a hysterectomy, then chemo, then radiotherapy. My treatment ended in July 2010 - one week before my 47th Birthday!

To say I've been on a rollercoaster is an understatement and I`m still coming to terms with it all now, over two years later and truth is, my diagnosis came as a complete shock!
I was told that I had fibroids after an ultrasound scan picked them up however, a later MRI scan confirmed that it was cancer and my journey with womb cancer began!


To be honest, I`d had problems for years but never went to see a doctor! I was always scared that they`d find something serious – like cancer!! So I`d put up with things like very heavy bleeding, pain etc for over 30 years!!

Receiving the news was a complete blow and the fact that I received it over the phone (when I was in the house on my own) didn’t help!
Because my Consultant said he was 99.9% sure they could remove it all, I`d figured there was no need to worry my family about something that might not happen, so I decided not to tell anyone about ‘the cancer’ until after my hysterectomy (only my husband knew)

When the pathology results came back they showed there was a high probability cancer cells were still present, so I had to come clean and tell people! I live on a small island off the west coast of Scotland and rumours start quicker than the drop of a hat! So I decided to be completely open about having cancer so they didn’t have me dead and buried before I’d even started the treatment!

Telling my parents was very difficult. It was hard for them to come to terms with their eldest daughter having cancer – as they`d come from a generation where “cancer” meant death and explaining things was pretty difficult, especially as I was having problems finding accurate information about womb cancer!

I resorted to scouring the internet for information and devoured so much stuff that I felt like a walking library!

Time has passed and I still deal with various health issues: some as a result of severe anaemia that I`d had before the hysterectomy and some as a result of the treatment. I have been diagnosed with lymphoedema in both legs, and also an underactive thyroid; both as a result of the treatment. I also have bowels problems as a result of the radiotherapy.
However, life goes on!

I don’t dwell on what`s happened but now use my experience, to help other women, especially those with womb cancer!
I didn't want other people in a similar situation to experience the same loneliness I`d had when first diagnosed and in my seemingly never ending search for information and support, I came across an American Facebook group: My Fight against Uterine Cancer. This is where I met Debra!
We were bemoaning the fact that there didn’t appear to be any UK based womb cancer support groups around and Debra suggested I start one!
So I did!
20 minutes later, on the 11th April 2011, Womb Cancer Support UK made its first post on Facebook!
Debra helps me run the group, and we not only support each other, but raise awareness of womb cancer and support everyone in our group.

What started off as an online support page on Facebook for other women going through womb cancer, has now grown to not only include a private chat group, but a website, a blog, a twitter account, a petition calling for a dedicated womb cancer charity AND fundraising for a womb cancer research project!

I feel humbled by all the remarkable women in the group! They tell us they wouldn’t have been able to get through their own cancer ordeal, without WCSUK!

Doing something positive helps me… and if it helps others in even a small way then I'm happy!
Personally, it`s been a long 2 years and I’m still far from 100% but its good to see how WCSUK has grown and now encompasses awareness as well as support as its main aim.

Womb Cancer Support UK - No One Fights Alone!